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    • #17242
      Colleen Steele

      Years before my son was listed for transplant we started a Children’s Organ Transplant Association (COTA) fund for him. COTA helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. Basically you create a fundraising team consisting of people you know and trust and COTA is there for supervision, guidance and to provide a secure place to hold the money until needed. This way people knew exactly how their financial donations would be used and if my son ended up not having a transplant, the money raised would go towards another COTA patient in need. In 2013 my son was listed and a year later received a heart and double lung transplant. The money saved in COTA continues to help us to this day. Another benefit to the fundraising is that we where spreading a lot of PH awareness in the process. We made sure that the public fully understood what disease was leading my son towards the transplant path.

      Have you thought about or started any fundraising to help prepare you financially for transplant? Are there options out there similar to COTA but for adults?

    • #17356
      Kaye Norlin

      I was on Medicare and a good supplement by the time I had my transplant, so no fundraising needed I received 2 bills, one for $1.37 and another for $37.54 (a mistake on both counts I think). Meds are covered by medicare and Part D so I pay my co-pay which isn’t much. Luckilly, I can pay for it.

    • #17363
      Colleen Steele

      Kaye, thankfully we have good insurance so the actual transplant balance for us was minimal. What we have primarily used his COTA for is the travel and cost of living during recovery (I had to quit my job and move to CA with my son for 4 months during his recovery), medication, procedure and treatment co-pays especially when the expensive deductible is due, etc.. COTA helps with anything transplant related both when listed and it then continues post.

      I don’t want to give the impression to others considering transplant that it is financially impossible, because there are many options out there for coverage and an assigned social worker will help problem solve the concern. I know a lot of people who didn’t do fundraising and managed. Personally we would have struggled without the financial help from the fundraising, so it’s been a blessing.

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